Reply To: New- CIPD and Central Nerves/ Cranial

September 25, 2016 at 2:32 am

Hi, I’m feeling confused and anxious and need to touch base with someone who may be able to give me more advice from a patient’s viewpoint. I am struggling to find a neurologist who will accept that my new alarming cardio/ swinging blood pressure/vertigo symptoms may be related to my CIDP. I saw the second neurologist last week who brushed off all my questions about the possible connection and argued that it was ‘extremely unlikely’ and basically dismissed my worsening symptoms as being my cardiologist’s problem ? The cardiologist on the other hand (my second one) seems to be unfamiliar (and disinterested) in investigating the possible link too. In the meantime, I am wearing a event monitor until
next Wednesday but am unhappy with the care I am receiving but cannot afford to keep
trialling new specialists. I think the neurologists in particular are a little dismissive of my disease because I am ‘functional’ and unlike the majority of their other CIDP patients, can still walk without obvious signs of disability. I am getting to the point that I am becoming scared to go to sleep as most of my palpitations, low/high blood pressure, dizziness, sweats etc occur when I am laying down. Stress may be a factor but I believe it is a product and not the cause. Despite a v healthy lifestyle and not fitting into any of the 6 main risk categories for heart disease, I have recently been told that I have blockage of one of my carotid arteries and also between 25-50% coronary artery blockage. I am only 58 and exercise regularly. I’m sure my autonomic system is being affected but can’t seem to convince anyone else.